Thursday, November 26, 2015

larry's second opinion

Happy Thanksgiving, friends! I suppose that you are now rousing yourself from a tryptophan-induced coma (or are about to succumb to such fate)'s a good little story to keep you amused while you wait on your pancreas to catch up to life. 

Yesterday, James and I went to see Dr. Lawrence Einhorn, an oncologist at the Indiana University Cancer Center. To those outside the world of oncology, that's just another doctor. To everyone else, Einhorn is something like a god. He's the man who treated Lance Armstrong, and he's the man who came up with the treatment regimen that has basically cured testicular cancer. A few weeks ago, I mentioned to a retired-from-Duke oncology researcher that we were planning to see him, and his eyes bugged out in total shock and amazement. "YOU got in to see EINHORN?!" came the flabbergasted reply. I might as well have said, "I'm having tea with the Queen next Tuesday." 

Well, yes, we got in to see him. How? "The luck of God," as my father likes to call it - a coincidence so striking that it's clearly the hand of God. (Spend much time following God and you find out that He is, in all His sovereignty, amazingly "lucky" -- that is, things always "seem" to go His way.) 

Lydia's teacher...of all the teachers she could have had...has a father who was a doctor. That doctor just so happened to be a former colleague of Dr. Einhorn's. Lydia just happens to be the sort of kid who talks about life in a matter-of-fact way, so she didn't think it odd to talk to her teacher and classmates about the fact that "my dad has lung cancer."  Her teacher, of all the responses she could have had, was moved to act on our behalf. 

So there we were.  Meeting Dr. Einhorn. Getting the mother-of-all second opinions. I guess I should say that we were expecting to hear something like, "Sorry 'bout your luck, there's nothing we can do yet, you're doing everything me in a couple months to see if a clinical trial has opened up." But it played out radically different from that, and I apologize in advance for the length of this post. (Sorry, not sorry.) 

Dr. Einhorn is unsure of James's diagnosis of squamous non-small cell lung cancer (NSCLC). 

Here's why.
1. Squamous NSCLC rarely occurs in non-smokers.
2. Squamous NSCLC usually takes over the entire chest cavity...just "explosions" of tumors all over the right and left sides of the lungs, all the lymph nodes, up into the neck, etc. Strangely, James's tumors have all stayed on the right. (One tumor was so large that it started to cross the midline, but nothing else.)
3. Squamous NSCLC rarely - rarely - metastasizes to bone.
4. Squamous NSCLC that has metastasized to bone does not respond so quickly to chemotherapy. 

This last point is key - Dr. Einhorn spent a lot of time unpacking the timeline of James's "hip tumor." (The one in his right ilium.) The tumor first showed up as a "blip" in a PET scan in May...James started experiencing pain in June...which then became moderate-to-severe pain in July...which then showed up as a tumor in a scan in July...which then responded to chemo pretty much immediately...and was "PET negative" in October. (It was news to us that his hip no longer houses a cancerous tumor...Dr. Gupta had told us that everything was "better." WOW.)  Dr. Einhorn actually said that it is "strange" how this tumor responded, and asked more than once if James had ever fallen (which would explain the PET scan "blip" as well). "I am 99% sure this was cancerous in July...but now it's not there. That is strange." (I could almost see him mentally scratching his brain.) 

So here's the plan.
1. James is stopping all chemotherapy until "we" figure out what he's got. Dr. Einhorn was dictating a communication to Dr. Gupta on our behalf to that effect yesterday. And I talked to the scheduling gal; all future appointments have been cancelled.
(James said the visit was worth that news more chemo...for at least 3 weeks!)

2. Jay, Dr. Einhorn's nurse, is procuring James's biopsy samples from the surgeon. IU-Health will reexamine them to determine if James truly has squamous NSCLC.

3. If it is determined that yes, it is squamous NSCLC, James's biopsy samples will be sent to University of Michigan's genetics lab for testing. It is possible (1-in-3 chance) that James has a genetic mutation that has led to squamous NSCLC. 

If James has one of those mutations, he stops all IV chemo and takes a pill form of chemo that is having remarkable results. No one uses the word "cure" in oncology (or only very rarely) but people are living for years and years on this stuff.

4. If it is determined that yes, James does have squamous NSCLC without a genetic mutation, he stays on one of the chemo drugs he is currently on, gets off the really harsh one with the nasty side-effects, and we stand in awe of what God has done on James's behalf. He has kept it from taking over his chest, he allowed the chemo to work, He removed the tumor from his hip, He has sustained his life, He has allowed a stage IV lung cancer patient to have energy to shoot hoops, He has..., He has...., He has...........

5.  If it is determined that no, James does not have squamous NSCLC, then we first of all say, "Wow. Look what God has done," because there were multiple pathologists in multiple countries who all came to the same conclusion...and that would just be...strange.  If James does not have squamous NSCLC, he gets off all IV chemo, takes a monthly chemo-pill, and...see above for expected results.

I will give you some time for this to all sink in.




Okay.  Now answers to a few questions.

Is it really possible that the diagnosis was wrong?
Yes. Apparently, it happens, and what typically results is the oncologist gets the pathology report and aggressively starts treating the cancer...and the doctor rarely stops to think "Hmm, this isn't adding up..."

Is Dr. Gupta a terrible doctor?
Absolutely not. We remain convinced of his skill, and touched by his compassion. If anyone I knew got a cancer diagnosis, I would refer them without hesitation to him. This experience just goes to show the benefit of a second opinion.

Do you think it would have gone differently if you started with Dr. Einhorn?
Probably not. I think Dr. Einhorn would have taken the same initial course of treatment with James - James was, in fact, treated with Dr. Einhorn's regimen of chemo last fall. Had we started with Dr. Einhorn, we would probably be getting the second opinion from Dr. Gupta...and getting the same news, with Dr. Gupta saying, "This is strange. I am not sure you have squamous NSCLC." These two men are just that good at what they do.

When will you know?
It will take about 3 weeks to get all the results in.

Does the hospital really still have the tissue samples?
Yes. That stuff doesn't get thrown out. It is possible it's not a good enough sample or that there's not enough of which case they would have to go in and get some more from James. (We didn't find out what exactly they will be biopsy-ing since James doesn't have lots of active tumors anymore...but we are comfortable with leaving that to the experts.)

If it's not squamous NSCLC, what does James have?
Dr. Einhorn thinks that James's tumors are acting a lot more like adenocarcinoma.

How can we pray?
We don't know how this is going to play out, but there is obviously a lot of room for God to be at work. Pray that His hand will be strikingly evident. (I always like it when doctors say, "Well, this is strange..."). Pray that God will get the glory!

Did we just find out God worked a miracle?
Yes. No matter what the diagnosis, James was healed of the tumor in his hip. Thank You, Lord.

Can I take my Thankgiving Day nap now?
Yes, you should do that...but not before you give us the chance to say Happy Thanksgiving!!  Now go have a great earned it. 


  1. Hallelujah to our Great God and Savior Jesus Christ our Lord Jesus Christ! We will wait patiently for our Faithful God.

  2. Hallelujah to our Great God and Savior Jesus Christ our Lord Jesus Christ! We will wait patiently for our Faithful God.

  3. Agree with Terri, will keep praying for all of you and praising Him with you.

  4. Wow. Just wow. PTL. Continuing to pray. Love.

  5. Praying expectantly! Praising our Lord!

  6. Amazing... Just Amazing.

    Dave and Kathy Kransberger

  7. Praise God! That's just glorious. Continuing to pray with you guys!